If you're offended by swearing, you're going to want to stop reading this instant. Like right now. Because I'm so angry that I could spit nails and instead I'm going to swear, A LOT.

Today is apparently Give-Your-Opinion day. Not just that, it's Give-Your-Opinion-And-Be-An-Asshole-In-The-Process day. I had my second neurosurgical consult today, with a specialist who has done 15-20 of these surgeries each year for the past 20 years (which is significant because it's not a very common surgery). He's skilled, he's good at what he does, he's literally had good results in every surgery he's done (which has everything to do with patient selection I realize, but that's beside the point for now). He's on lists by associations of people with this condition and I truly have every confidence in him.

And yet, The Fiance's mother (who by the way, I really really want to add a swear word to, but am refraining out of some very odd sense of respect) feels that what we're doing is stupid and ridiculous. That it's elective brain surgery, that it's going to ruin The Fiance's future career, that it's going to ruin the wedding (that incidentally she doesn't want to happen so isn't that just fucking perfect for her then? ISN'T IT?). And that she's read the literature and I need to wait a couple of years.

Fuck her. I'm sorry. I warned you. But fuck her. Yes, she's intitled to her opinion, but she has absolutely no earthly idea what she's talking about. NONE. I have waited over a year, I have lived with daily pain for over a year, I have gone to doctors and been patient. It's remarkably easy to sit aside and tell someone to wait when you're not experiencing pain or when you're not the one who can't see to the left or right or down. Or who can't walk up a flight of stairs without tripping. It's really fucking easy, but it's also wrong. And moreover, my having brain surgery (which p.s. can we get one thing straight? It's not actually surgery on my brain, it's on my cranium and the lining of my brain) does not have any impact on her life. None. So why the hell does she get to have any opinion on this at all? I don't know why I care, I'm trying really hard not to. I hit around a racquetball for well over an hour trying to get these frustrations out and yet, they're still here, ever present, making me want to punch everyone in the face.

And as if that wasn't enough bullshit for today, I then got to talk to my sister. I talked to her yesterday and she accused me of being too flippant and unconcerned about having brain (cranial!) surgery and I explained how offensive that idea was and she backed down some. I may seem flippant, but do not assume things that you do not know. I've always used humor as defense and yes, I make a lot of jokes about this, but I am incredibly aware of how serious this is. Anyway, I wrote down all of her questions, about half of which were ridiculous and I asked them to the doctor today (and for the record, everywhere I said "I" in the last sentence you should read as: The Fiance, because no one wants to prove my sister wrong more than him.) I talked to her this evening and started giving her the answers to said questions. Her response after the first one was to tell me they were wrong. I'm sorry, maybe this makes me a bitch, but he's a doctor and she has a PhD, and that's not the same. He is a brain surgeon and she is not. And frankly, I trust him more than her. Why? Not only because of his credentials, but because he actually listened to me today. He opened his freaking ears and accepted that maybe I'm not creating this out of thin air and maybe, just maybe, I'm in pain. Oh and also? He looked at my MRIs. And he did tests. And he's not 2 fucking thousand miles away guessing about what's happening.

She went on, ad nauseum, to tell me that I shouldn't be having surgery here because it's not Los Angeles or New York, and subsequently there couldn't be a good surgeon here. She then accused me of not seeking out a better neurosurgeon because I wanted to spite her. And that's when I lost my shit.

Let me make this point painfully clear- I am advocating for my own health. I will not have brain or cranial or any other kind of surgery by someone who I do not feel is the best at what he does. I will not settle for anything other than perfection. I am not an idiot, I am not a moron and I actually do know what I'm talking about. I do not have a degree in brains, I do not work as a neuro anything, but that's why I go to doctors instead of performing surgery and writing prescriptions myself. That's why I get second opinions and read the literature. I AM NOT STUPID.

I am so frustrated I could punch a hole in the wall. I don't even know what to do with myself. I feel like I'm crawling out of my skin in frustration. I don't know how either of the two assholes who felt a need to be rude to or about me today came to the belief that they were right or that they had any business telling me what is. I just don't understand. I don't get it.

I don't know what to do, but then again, I guess that's what everyone's been trying to tell me.

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comments:

KT- I am sorry your family is being annoying(trying to refrain from bad words bc the way my family is acting, it might not stop.) I highly doubt you would be running around letting anyone mess with any part of your brain. And how is that going to mess with his career? I really think we need to lock parts of our family together and run. My sister thinks that I don't need anything for pain even with infected leg bones and that I should be able to do everything like a "normal" person...yes oh mighty sister I enjoy hopping around, having an infection that even 25 mg an hr of fentyl plus dialudid for breakthru doent get rid of all the pain, hmm yeah my idea of fun. I guess I need to upddate my blog too. Praying for you and know you arent just causing faily "fun"Pam

What you do is this--go with the "FUCK 'EM, FUCK 'EM BOTH" school of thought, and don't utter another word on this subject to either of them. And then, if I were you, I would unload about 24 years worth of "you suck at being a sister" frustration and tell it to HER like it is for once! Since she can never seem to pass up the opportunity to treat you to her opinion, it's about time you returned the favor. Just do it for yourself; in fact, doing that one thing just might relieve the pressure in your head enough so you can make your decisions with a clearer mind! As for the MIL-to-be, just who the fuck IS she anyway? Does she say this shit in front of The Mr? What does he think about that? Well, no matter. I don't see any reason why you EVER need to speak to her about these things either. But, I have the wisdom to know all of this is easy for me to say...but can you get some clue as to how LIVID I am on your behalf????? Not that you need that from me. BUT, I have been following your story for a very long time and if either of these two had any clue how long and how often some of us have been all over your back to get to the point where you are now...well, all I can say to the two of them is "shut the fuck up!"But especially to your sister...I will tell you the same thing I tell other friends with sister problems of this nature. This is not about you; this is about her. This is HER problem, and the stuff she spouts half the time doesn't REALLY have anything to do with you having surgery, not having surgery or whatever. It has to do with her and why she has an insatiable need to put you down. Which I find SO wrong. You are her sister, her only sister--and someday if she ever pulls her head out of her own ass she might be sorry for the way she's been. But I'm not counting on it, since she so obviously has issues that have nothing to do with you or your health. Just be happy you're you and not her. Actually, after putting on my junior psychologist's cap, I'd be willing to bet that whatever is floating around in her brain is worse than what is happening in yours. But I would really imagine it is much easier for her to try to run your life than to straighten out her own. BOTTOM LINE? FUCK 'EM BOTH. And thank God everyday for the 2000 miles worth of distance that separates you and The Mr. from these two pieces of work.

And even though this is irrelevent and you certainly don't need another voice chiming in, I still feel the need to tell you how proud I am of you for not giving up on doing what needs to be done for your health, despite all of the things working against you! You are strong and determined and smart, and as long as you and The Mr. are confident and happy with your decisions and the way things are going, that's all that matters. I'd apologize for writing you a book and for going all snarky on your sister, but I'm not sorry. Enough is enough with her. And the MIL? She's obviously jealous that her baby boy loves you now instead of her. Which is a whole other can of worms--FOR HER. Let them both try to deal with your head for a while and then they can give opinions...

So, I'm here with ya no matter what, Katie. I love ya dearly and consider myself lucky to be your friend! Go forth and do what YOU deem to be right...

Have you heard them extol the wonders of vitamins yet? "You don't need surgery! Just take these vitamins I heard of." I'm unfamiliar with this concept of respecting the in-laws opinion. If you didn't respect their opinion you might see this as their dysfunctional way of saying "we are worried."

It does improve with time. When my mil heard I might want to try a clinical trial she sighed "Well it's her body." I would have peed myself but that would worry her.

You do what YOU need to do. Sounds like you and The Finacee have a good handle on YOUR lives, and he sounds like a keeper. As for ruining the wedding, why don't you just tell the MIL she's doing a good enough job that you couldn't bear to take the responsibility away from her?

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About Me

I'm a 26 year old former teacher turned full time graduate student. I live in Southern California after a 3 year stint in New Orleans with my husband Slappy (formerly The Fiance) and our cats (yea, we're those people).
In February of 2006 I was diagnosed with Chiari Malformation, which is a fancy way of saying that my brain was too big for my skull (get it? overflowing brain). On November 27th, 2007 I had brain surgery which allows my brain to exist indefinitely in my spinal canal. 13 staples, one cow heart lining and a multitude of doctors and medications later, I'm living a much improved decompressed life.